Friday, July 31, 2009

Without fail, EVERYTIME I worry about "silly" stuff, something happens to put me back in place. Tonight Mike felt warm and I took his temperature. It was 101.8. We had gotten him into bed, so I changed him and as I did, I saw he had blood in his urine. I believe he may have a UTI. I called hospice and they ordered an antibiotic for him. I also asked for a nurse to come tomorrow, since no one has seen him this week. The on-call nurse seemed surprised about that. The unpredictability regarding his health is the EXACT reason why I believe he should not be discharged from hospice. One minute he's fine, the next he's not.

Thursday, July 30, 2009

I have been so overwhelmed these past few days. On Sunday, Mike's aid took a day off (deservedly so), but I had to take care of Mike all day. I had started not feeling well and it only got worse.

On Monday, work was UNBELIEVABLE. I can't remember the last time it was that hectic. Add into the mix, me not feeling well, trying to get Mike and hospice straightened out, thinking ahead to Brandon's surgery and Courtney's tuition bill due on 8/3, I was good for nothing. As strong as I am, I think I came close to my breaking point.

To date, Courtney's tuition is still up in the air, work is still crazy and I'm still working on the hospice situation. Not much has changed.

I spoke with one hospice yesterday and they, very politely said that if our current hospice discharged Mike, there's nothing they could do. I quickly pointed out that Medicare's Guidelines for Hospice Care gives a list of reasons why a hospice can discharge a patient: 1) they pass away, 2) they move, 3) they request a discharge themselves or 4) their illness is no longer considered terminal. As much as I would LOVE for #4 to not be true, Alzheimer's is, unfortunately, always terminal. This is not the same disease as cancer, where by the grace of God a patient can go into remission. There is no remission for Alzheimer patients, so how then, can they delare that Mike is no longer considered terminal??? I got no answer, "they just do". If they developed a cure for Alzheimer's, I wish they would share it with me.After I got nowhere with my second hospice (I was hopeful since it was Good Shepherd Hospice and is affiliated with the church), I set in motion my call for help. I reached out to all my contacts within the Alzheimer community. After many calls, and e-mails, I am waiting to hear back from one hospice who is hopeful that they can take Mike's case. All I wanted was for Mike to be evaluated, because I believe once he is seen, he will not be turned down. Good Shepherd asked: does he still walk - NO, does he talk - NO, is he incontinent - YES. They seemed surprised that he was discharged, but nonetheless, didn't seem too eager to help.

Our social worker said she would move "heaven and earth" to help us. Funny thing is, I told her that she shouldn't have to. Mike should be ENTITLED to these services - no questions asked. Alzheimer's is unpredictable - Mike was given Last Rites 2 years ago. This disease does not take the same course as other terminal illnesses, where the amount of time people have left can be predicted. I was once told by a hospice agency that they had gone to an Alzheimer's patient's house 3x in anticipation of their death. Family was called all three times, they were expecting the end. Three times, the gentlemen woke up the next day like nothing was wrong. I remember thinking about that poor family and all that they were going through. It's a shame that families that are already in a crisis, can't get the help and care that both they and their loved ones deserve. I get VERY defensive when it comes to Alzheimer's Disease because from day one, I have had to fight for everything for Mike. If anyone is ever discriminated against, it's Alzheimer patients.

Friday, July 24, 2009

Mike's hospice nurse came by tonight and advised us that they will be "discharging" Mike from hospice in two weeks. Yes, you heard me. Even though I was told that some Alzheimer patients have been on hospice for years, our nurse said that their doctor is a "stickler about Medicare rules and they don't feel that Mike is in the end stage and should no longer require hospice services. And so, my fight begins.............

Alzheimer's Disease is unpredictable. It doesn't follow the "normal" path of other terminal illnesses. One day a patient can be fine, the next not so good. I know, because I have lived with Mike these last 8 years and have seen it first hand. Trust me, I am THRILLED that Mike has been "status quo" for so long, but to say that he is no longer "end stage" or in need of hospice services, I'm dumbfounded. I guess they expect me to take Mike to the Dr. for check ups if he gets a fever or bed sore? I'm not going to get too upset at this point, because I was never particularly fond of Hospice Care Network. Mike's nurse has been helpful, but the overall attention has not been there. This may just mean we may have to find another hospice to take him on. It bothers me because I feel like I've had my security blanket taken away.

I've found another battle to fight. The nurse said Medicare has strict guidlines for hospice patients. Apparently, no one at Medicare has ever had to deal with a LO with Alzheimer's. This disease is like no other. Other illnesses may be just as sad, but the amount of care needed for Azheimer patients should automatically qualify patients for hospice...no matter what stage they are in.

Wednesday, July 22, 2009

Yesterday, Mike and I were together for 24 years!!!!! Yesterday was the anniversary of our first date together. As I lied next to him last night, I remembered that night all those years ago, and realized that NOTHING is what we had expected it to be. Of course, it was a first date, so I guess at that time we didn't even realize we would ever get married. We had our whole lives ahead of us. The absolute uncertainty of what was ahead of us, was exciting, but Alzheimer's was NEVER something that even entered our minds that night. Ironically, Mike's mom had been acting strange at that time, but it wasn't until December of 1985 that Alzheimer's stormed into our lives. The world as Mike knew it, would NEVER be the same.

Mike's mom was only 45 when she was diagnosed. Her doctor had specialists fly in from Albany to help determine the cause of her unusual behavior. At first they thought menopause, then Crautzfeld-Jacob disease (mad cow), then finally, 5 months after this behavior started, she had a "brain biopsy" performed and she was officially diagnosed with EOAD. Our nightmare had just begun, as did my time together with Mike. Strange how Alzheimer's popped up for the first time in the beginning of our relationship, and how it will remain there until the end.

Tuesday, July 21, 2009

This past Friday night, on my way back from getting Italian ices, I came across the after affects of an accident. Right in my path, was lying a man who apparantly had been hit while riding his motorcycle. He was surrounded by 4-5 men who were trying to shake him into consciousness. I HAD to look because he was right in my path. There were no police or rescue vehicles there yet. Needless to say, I was a wreck. I still am when I picture that man lying there. I was shaking and crying the entire ride home and when I got into my house, I fell apart. The complete helplessness I felt was unbearable. I said my prayers that night and subsequent nights. He had no helmet on, his arms were bent under him and his legs were all twisted. By some miracle, I hope that he was just unconscious and that he is now recovering. I can't think of the alternative. This incident has left me realizing just how sensitive I am, especially when it comes to my feelings of helplessness. I believe that Mike's illness has made me much more sensitive than others.

Tuesday, July 14, 2009

It's funny how the universe works. I truly believe there is a plan for all of us. God works in mysterious ways, and Lord only knows that in the last 8 years, that has been proven to me over and over again. I may think too deeply about things, but that's who I am. It's often my thoughts and beliefs that comfort me when I am alone.

I was talking to Courtney the other night and explained that I believe God is preparing us for her going to college. I haven't seen much of her the last few weeks, and while I do miss her, I realize that she needs to spread her wings. It's called "growing up", "maturing". Little by little, we are spending more and more time apart. Courtney's summer has, thankfully, been very busy. Working at camp, going into the city, movies, dinner with friends, concerts at the beach etc. There's nothing that makes me happier than to see her being a "normal" 17 year old, yet at the same time, it makes me equally sad to know that I am losing her. Yes, it's the circle of life. Not that long ago, at least the way I feel, I was doing everything that she's doing. Now it's my turn to sit back and watch our daughter mature into a self reliant, mature young woman.

Friday, July 10, 2009

It's summertime, vacation time. Out of 13 people in my office, guess who is the only one NOT going away? They talk of cruises, Arizona, Vegas, Fiji, Aruba, France. It's hard to hear. I will NEVER begrudge anyone a vacation, and I'm happy for all of them. Jealousy does not come into play here. But I am honest when I say that listening to all the talk hurts. The kids and I have not been away for about 4 years now. And even if a fairy Godmother flew down and gave us a paid vacation, we still couldn't go because of Mike. His health is so unpredictable, I would never go anywhere far away. I hate feeling this way because I KNOW I am so blessed in other ways. I guess I have a difficult time realizing that I AM human after all and I do hurt. I get sad, and even sadder for the kids. They deserve time away and I just can't give it to them :(

Sunday, July 5, 2009

Fourth of July night we were all exhausted. After getting up so early in the morning, spending so much time at the beach & walking so much, we were all spent. Brandon was a terrific chef and outdid himself on the grill. Afterwards, we treated ourselves to ice cream. We all watched the live fireworks on TV and had a blast. We were singing the songs that the band was playing and we laughed that anyone walking by would swear that we were all drunk - but not an ounce of alcohol passed our lips. We laughed so much, it was so nice.

The next day we all got up late, had a nice breakfast and just relaxed. It was SO nice to have more family with us and it was a reminder of just how much I really miss them.

Overall we had a memorable weekend and did things we would never have been able to do had my sister not come in. I didn't get to do any of the things on my "chore" list, but the trade off was so worth it. There will always be another day for work-stuff.

The first picture Courtney took at Field 5 at Jones Beach. The Nikon Theatre is in the background. I LOVE this picture because it doesn't look like it's on Long Island. It's too pretty. The second picture is for Lauren. It's her and Courtney when they took a walk before breakfast.

It all started with an e-mail from my sister on Thursday. A seemingly innocent e-mail sent to me asking what we had planned for the 4th of July weekend..."Nothing special, just a BBQ with the kids, brother and mom". I had off on Friday, so I decided to pick the kids up from their jobs as camp counselors. Since we haven't had a real vacation in 4 years (due to our situation with Mike and finances) I thought the least I could do was take the kids to Friendly's for lunch. Afterward, I decided that instead of going to Target on Saturday, I would go then, so I would have plenty of time to do the numerous "chores" I had planned for the long weekend. As we left Friendly's, I got a call on my cell phone from my sister. I noticed that she was calling from her cell phone. I had just spoken to my niece that morning to see how her new job was going. I was hoping everything was OK. She asked if I was home (clue #1), "no" I explained, we were on our way to Target. "Oh" she said and asked if my mom was at my house. (clue #2) "No" I explained, she was tired and went home. My sister sounded disappointed. I told her my brother was at home, she said "oh". I told her that if she needed to talk, I would be home in about an hour. I clicked my cell phone shut, my hands were shaking and I said to Courtney and Brandon, "I think Aunt Gail is in NY". They asked why, so explained my suspicions. I called my mom and told her the same thing. My sister and her family had just come in for Courtney's graduation less than a month ago, so I started questioning my hunch. We were walking in Target, I turned a corner and there was my sister, brother-in-law and 2 nieces. We acted like fools in the store, we were all so excited, I'm not sure who was happier to see who. So began our "Surprise 4th of July Weekend". {She wanted to surprise us and just show up at our house, but when they got there and didn't see my car, she called me to find out where we were}.

I should have known we were off to a crazy start when after my sister came out of the bathroom at Target, she explained to us that there was a woman inside who went into labor. Luckily there was a nurse in the bathroom that was able to help her. We went home and happily explained to Mike about our surprise guests. They treated us to take-out from Chili's and then we went to see the firework display at the local fair. My BIL stayed at home with Mike so I was able to go with my sister and the kids. For some reason, Brandon didn't want to go, so he stayed behind with my BIL. We parked in Hofstra's parking lot and got front row spots to a great firework display. Had my sister not come in, this was something we would have never been able to do. We had a great time and laughed ALOT, my only regret was that Brandon wasn't with us.

Sometime during the day on Friday, my sister decided it would be "fun" to cook breakfast on the beach, the way my dad did for us all those years ago. We got up early, my sister came over around 7am and we were supposed to leave. Unfortunately, Mike started coughing alot and I didn't want to leave him. Elaine (our new aid) wasn't due to be in until 8:30. I asked Charlie (my BIL) if he felt comfortable staying with Mike for that 1/2 hour until Elaine came and he said "no problem". I knew he appeared to be a little concerned and uncomfortable, but he still said yes anyway. Had I not been totally sure that Mike was going to be OK, I would not have gone, but he seemed to be finishing up on his coughing spasm. We headed out, only to find out when we got to the designated BBQ parking lot, all the BBQ grills were being used or saved. One man told us he had been there since 5AM. It was about 8:30am and we were totally looking forward to this breakfast on the beach. I knew I had a portable grill at home, so I left my sister with Courtney, and my nieces, and headed home with Brandon - who, in the end, decided to stay home. :( I hit another snag when I couldn't find our table-top grill, so off to Rite-Aid I went. Mission accomplished, I headed BACK to the beach -thank goodness, we're only 15 minutes away. By the time I got back (around 9:15) the place was even more crowded. People actually bring tents and air mattresses with the intent on staying there all day until the firework display at 10pm.

Why did I think that Matchlight Charcoal would light without lighter fluid - oh yeah, that's right, because that's what their advertisement says it will do. No luck. My sister had to borrow lighter fluid from another family. The coals got so hot so fast that we cooked a pound of bacon in about 10 minutes, pancakes and egg sandwiches were made in another 15. By this time we had frisbees flying around us, which would not have been a big deal, had the coals in our grill not been so hot. Twice we thought something was going to go up in flames and that included the flying umbrella. It was SO windy that day. After a leisurely breakfast and great opportunity for people watching, we decided to pack up and head across the parkway to the actual beach. At this point, I was relieved that Brandon did not stay. With his weak ankles, he would have NEVER been able to do all that walking, especially on the sand down to the beach. My sister and I stood in knee deep water, while the kids went further into the waves. The water was REALLY cold, but we were able to get used to it after a while. My niece, Lauren was having so much fun. At one point she decided to sit down in the water and she was laughing so hard when 2 waves came. Needless to say, she swallowed alot of salt water and was not happy. Shortly after that, we headed back home to shower and get ready for our BBQ at home - on a "regular" grill with all the right equipment. We showered and changed and got ready for 4th of July night. ..continued in the next blog.

Pictures are of me and our grill at the beach making breakfast and Brandon at home on our grill making dinner. July 4, 2009.

About Me

My husband Mike was diagnosed at the age of 36 with Young Onset Alzheimer's Disease. For almost 11 years, my children & I took care of Mike at home - until he passed away on February 28, 2012 at the age of 47. When Mike was first diagnosed, he gave me "permission" to place him in a nursing home, but I chose not to do that. With the help of my children, family &aides, I kept the promise to myself that I would keep him home until the "end". I began this blog about 5 years ago to keep family and friends updated on Mike's condition as he weathered some difficult health issues and hospitalizations. During the process, it became a method for me to vent about issues that directly effected us as a family caring for someone with AD. Nothing along this journey has been easy & I will continue to advocate & be the voice for all those patients who have been silenced by Alzheimer's Disease. NO ONE SURVIVES ALZHEIMER'S, the disease does not discriminate and I will do all I can to make a difference. My faith has been my strength and we have been blessed with MANY angels along the way.
Mike will always be my hero!